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A Substantive Theory of Keeping the Spirit Alive: The Spirit Within Children With Cancer and Their Families

Lesley Faith Degner

Despite increasing survivorship, childhood cancer is nonetheless still a very traumatic phenomenon. Children and families must confront many new stressors and challenges. Understanding what families experience is essential if pediatric oncology nurses hope to provide sensitive and comprehensive care. To help discover meaningful descriptions and interpretations of families' experiences with childhood cancer, process-oriented qualitative research needs to be undertaken. A longitudinal qualitative study guided by the philosophy of interpretive interac tionism was conducted to arrive at an understanding of childhood cancer from the children's and families' perspectives. A theoretical purposive sample of 39 families residing in western Canada participated. Children (4¹/2-to-18 years of age) with a variety of cancer diagnoses and their families (parents and siblings) participated. Data collection methods included formal and informal interviewing and participant observation. Data were analyzed by the constant comparative method of grounded theory and analysis of illness narratives. Although the original intent of this study was to focus on the children's cancer symptoms, the children and families could not easily separate their cancer symptom experiences from the whole cancer experience and all its associated "rough spots." They first needed to talk about the overall cancer experience, which led to the development of the study's first substantive theory—Keeping the Spirit Alive: The Spirit Within. This substantive theory provided an understanding of how children and families used the process of keeping the spirit alive in response to them having to experience the phenomenon of the cancer: "getting through all the rough spots." Description of this theory is the focus of this article. Ways that nurses can assist children and families in maintaining a sense of spirit are presented.

Journal of Pediatric Oncology Nursing, Vol. 20, No. 3, 103-119 (2003)
DOI: 10.1053/jpon.2003.75


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